1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

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@auntnanny Wow
Jan, you have had a busy and full life!!!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)
@pfists

Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.

Jump to this post

@pfists I
know several others on this forum have done the IV&apos;s, I think Katherine has. The
abscessus is hard to treat, so I know they like to use the big guns and get into
straight into your veins. We will be pulling for you!  hugs -Terri M.
 

REPLY
ling123 | @ling123 | Jul 14, 2017
In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)
@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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@windwalker, it's interesting hear you talk about how your lungs react to certain conditions in your environment. I always get more sticky mucus when I'm cold. Chilly and damp days are my biggest foe. Even sitting in a room with air conditioner running too high will get me to cough and hack up mucus non-stop. The symptom improves or completely goes away when I'm warm.

REPLY
pfists | @pfists | Jul 14, 2017
In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)
@pfists

Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.

Jump to this post

Thanks...
Kinda perplexing.
In the meantime will continue saline nibs, aribika and The Vest treatments (It shakes mucus loose.)
I have had asthma since I was teenager 64 ys old now. I worked in the healthcare field also but took disability some time ago. I have been following this Mac link for about a year now and learning a lot.
Thanks for your input!
Shari

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 14, 2017
In reply to @beatitnow "Hi everyone. I have not written in a while. I have been in the process of..." + (show)
@beatitnow

Hi everyone. I have not written in a while. I have been in the process of moving for the last 6 weeks. I'm currently staying at my parent's house until we move into our house on Aug15! (And, yes, @katemn, we ended up buying a standing house instead of building...thank you for your advice.).

As a reminder, I have MAI and bronchiectasis, and I have been on the 3 meds for 4 months now. My parent's have a chlorinated pool in the back yard which is very nice. I have not swam in the pool yet because I wasn't quite sure if this brought more of a risk of getting further bacteria. I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!

Amy

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Hi Amy and JK, Here is the thread in the MAC group about swimming pools

- Swimming in chlorinated swimming pools https://connect.mayoclinic.org/discussion/swimming-in-chlorinated-swimming-pools/

PS: How to find discussion threads
1. Go to the MAC group homepage: https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Scroll through the topics.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 14, 2017
In reply to @beatitnow "Hi everyone. I have not written in a while. I have been in the process of..." + (show)
@beatitnow

Hi everyone. I have not written in a while. I have been in the process of moving for the last 6 weeks. I'm currently staying at my parent's house until we move into our house on Aug15! (And, yes, @katemn, we ended up buying a standing house instead of building...thank you for your advice.).

As a reminder, I have MAI and bronchiectasis, and I have been on the 3 meds for 4 months now. My parent's have a chlorinated pool in the back yard which is very nice. I have not swam in the pool yet because I wasn't quite sure if this brought more of a risk of getting further bacteria. I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!

Amy

Jump to this post

@beatitnow .. Amy, good to see you back! Glad I was able to be of some help in your new home purchase! Did you find you were able to get some "upgrades" in a standing home that you would have had to pay extra for in a new construction? Hope so!

Amy, personally I would NOT go within 10 feet of that pool .. despite it being SO tempting on a hot day! We KNOW the research even on showering .. why on earth would we want to emerge ourselves in that same water for any period of time .. take chances than do NOT need to be taken.. Personally I would feel the risk is too great! Think about it .. they chlorinate our drinking water supply .. YET MAC is still THERE!! Nope .. I would not personally .. just my opinion Amy.

From My File Cabinet:
SWIMMING POOLS AND HOT TUBS
https://patient.info/doctor/mycobacterium-avium-complex This can occur in those exposed to water vapour containing MAC (commonly in poorly maintained indoor hot tubs or swimming pools).

For your new home .. salt water pools? Research it .. BUT
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949190/ MAC is ubiquitous in distribution. It has been isolated from fresh water and salt water worldwide.

Amy, SORRY to be a bearer of potentially poor news .. but REMEMBER "Knowledge is Power" .. AND what you DO NOT want .. is when you STABILIZE from your antibiotic treatment . you DO NOT want your MAC to rear it's UGLY head again in the future. You want to STAY stabilized! Good to hear from you again .. keep us posted! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jul 14, 2017
In reply to @contentandwell "@beatitnow These questions posted by Amy are also of interest to me. For some reason I..." + (show)
@contentandwell

@beatitnow These questions posted by Amy are also of interest to me. For some reason I cannot find my way to Amy's post though. I am interested too if anyone knows anything about this. I use a chlorinated pool about 5 times a week for water exercise and I believe when we go away in October that the place where we are staying has a salt water pool.
___________________________________________________________________________________________

I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!
___________________________________________________________________________________________

Thanks, JK

Jump to this post

@windwalker, thanks Terri, just confirms my thinking above! I am going to add that info to my File Cabinet. Hugs to all! Katherine

REPLY
heathert | @heathert | Jul 14, 2017

Hi @katemn and all
Sorry it has taken a while to get back to you about the vinegar/acetic acid concentration to kill mac, but here is the link : http://mbio.asm.org/content/5/2/e00013-14.full
It is very interesting as NTM is again more difficult to kill.

REPLY
4 replies
Mariposa | @mariposa | Jul 14, 2017
In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)
@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

Jump to this post

Hi Terri,
Thanks for this comment so now I don't think that its just my imagination. I felt it in my bones the first winter 18 years ago coming from the East...big difference.
I didn't have lung issues then but also out here in the North Pacific they have a building code that they borrowed right out of California which it isn't, in the winter the cold humidity just comes through the walls and I made the mistake 18 months ago of buying a very charming and cute condo overlooking the garden on the first floor just above the garage which is not closed...the walls are there but the windows are opened.
My mistake, I bought in August and never thought of that possibility .

Another thing that been reading about ,a few people mentioned public pools and hot tubs,well that was what I did twice a week for the last 10 years. Now that my immune system is much weaker I know that I came back a few times with some kind of respiratory infection so I have stopped going since I found out about my bronchiectasis. I must say that I miss my aquatic work outs.

About the move I need all the luck that I can get so thanks, it's appreciated.

Andree

PS : I've been meaning to answer Katherine's really nice and interesting message but I have been so tired and busy, I will get there in a little while but in the meantime I apologize.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 14, 2017

Dear All,
As many of you know .. I also see a trusted Homeopathic Practitioner .. I am always concerned about a repeated use of ANY over the counter product .. I counseled with her on my use of the sleep product Unisom for my sleep disturbance.

Her response was: "With the Unisom, diphenhydramine or doxylamaine, it dries out the bronchioles, so that may cause rebound cough. Also, with long term use, it may cause memory issues. " Members, I am SO glad I check with a professional .. remember she is also a Pharmacist! Per her recommendation I have updated my File Cabinet per below! Hugs to all! Katherine

So my updated File Cabinet is:
SLEEP DISTURBANCE I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now "stable". As I have posted I really don't know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn't really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use nightly two things : a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
The TwinLab tabs have really helped me .. can't say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!

SECONDLY .. UPDATE: ** Sleep disturbance b. and ONE 3mg Nature Made Melatonin tab (As we age, our bodies produce less and less melatonin. If you're one of those people who say melatonin keeps you awake, it likely because you've been taking too big a dose. A few people can take 20 mgs and it puts them to sleep! Many of us will toss and turn with 10 mg. A small 3 mg dose works fine for me. You can always take two (or more) to find the dose that works for you. Melatonin is not a "One Size Fits All" )

Melatonin may improve sleep disturbances in a wide range of patients, including those in the intensive care unit (ICU) and patients with Alzheimer's disease. Several published cases report improvements in sleep patterns in young people with damage to the pineal gland area of the brain due to tumors or surgery. Based on preliminary research, melatonin may improve sleep in patients with asthma or depression. Further research is needed in these areas before a firm conclusion can be reached.

Another Tidbit .. I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:
You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.
For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

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